This blog is about my experiences with hypothyroidism and to swap notes with other people. I was diagnosed in 2009 and am still not entirely well, though I’m much better now than I was. I set up a thyroid patients' support group in London in 2010 and we continue to meet regularly and welcome new members. There's lots of info on the net aimed at thyroid patients, much of it contradictory and confusing. My aim is to provide a more balanced perspective and information from credible sources.

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Friday, 18 February 2011

The one legged piroutte remains beyond me!

Well here we are, more than half way through February already. Yesterday would have been my Dad’s birthday. Instead my niece gave birth and now I have a new great nephew! Just call me G.A.L. JMy sister and her family all live in Canada so I won’t see the baby for a while but they’ve sent pictures and he’s adorable. Very exciting and nice that Dad’s birthday will be carried on in our family as a significant date.

Also yesterday I had a great meeting with someone I came across on Twitter, an ex-research scientist who now has her own production company making documentaries and short films. She has some interesting projects on the go that I was able to offer some thoughts on and she was keen to see if she can help the British Thyroid Foundation London Network by possibly filming the information meeting we’re holding on 9th April. Could be exciting! I think it would be pretty cool if we could get a video of the meeting posted online for people who can’t attend. What do you think? We’re going to try and make it happen.

We met in the Wellcome Collection cafe on Euston Road, a great venue for coffee and cake and interesting chats. They also have some fascinating, free exhibitions there. If you don’t know it, check it out next time you’re in London.

I digress. It’s been almost 2 months since I left my job and I expected to have a lot more energy by now and general reduction in symptoms. I have not been doing very much. Well I’ve done a few things....but I have absolutely been taking it easy, yet I’m still really tired a lot of the time!

I think I am still slightly in denial that I am ill! My brain keeps thinking what a wonderful thing it is not to have to go to work and wanting to go off and play, but my body, unfortunately, can’t quite match my level of enthusiasm!

I still have not been ice skating this year and very soon all the outdoor rinks in London will have closed again and I’ll have missed it. Excuse me while I just say bah, it’s so disappointing to feel so limited. I feel I’m missing quite a bit at the moment. If I get an invitation to do one thing in a day, I can’t then really do anything else. Even if I just do that one thing, the chances are I’ll end up out of breath and needing to lie down to recover. And the only thing that seems to actually help me feel better is chocolate or cake!! This is no joke!

I’m lucky, so far I haven’t been one of these people who has put on lots of weight with my thyroid problem, I’ve put on some but not masses, I’m managing not to let it get out of control. But it’s so difficult!! I’m tired, I want to eat cake, I eat cake, my brain gets all over revved with sugar, I feel more tired, I need to rest, I don’t want to rest, I want to be out there living my life!!!

So I’m a bit cheesed off about that and not sure what to make of it. Also I got a bizarre letter from my latest endocrinologist registrar, cc-d to my GP, with a typo in it that said I was so tired and forgetful that I’d stopped taking my tablets completely which of course I haven’t at all! While I appreciate mistakes can happen it’s not a good one and I don’t like the idea of that letter sitting on my medical record!

I rang up and his admin lady indicated that his hand writing wasn’t very good and that the mistake had probably crept in when his notes had been typed up. He meant to say, I’m guessing, that I have stopped WORKING completely, not as in stopped functioning but as in left my job! She kindly promised an amended letter, I haven’t seen it yet. I may need to chase. I have to say it doesn’t exactly inspire confidence in the clinic as a whole. #justsaying.

And I am still waiting for the call from the endocrine nurse for the adrenals test the endo said he wanted to run....a month ago. They honestly don’t seem to be brilliantly on the ball there. It’s a bit of a worry.

Signing off, on a lighter note, can I say a massive thank you to all of you who have been in touch with nice comments about this blog and about the 9th April meeting in Hampstead. Details are now on the BTF website. If you want to come along all you have to do is email me to book your place – we need to know numbers in advance. And if you want to help, well that would be even more fabulous, I’ll be thrilled to hear from you!

Sorry this post has turned into a bit of a rant in places. How are you doing? Let me know! It's good to share!

5 comments:

The doctors office thing would infuriate me to no end. I hope they keep their word and fix the error. Hope you continue to get help and never settle for mediocre care. You deserve better. Haven't seen you in a while. Glad to see you!

Miss Tigerlily! How lovely to see you on here, thank you for stopping by and commenting. I just chased the clinic again and will write a complaining letter if it is not sorted out soon, the replacement letter and date for the adrenal test. I did that once before when they got something else mixed up and it worked a treat. I don't want to be seen as a complainer though - it's a bloomin mindfield! Thanks for your support. :)

Congrats on the great nepwhew!! How exciting!! What a mistake that doctors office made! You know what I think?? I reckon you should just go iceskating. Even if you need to go home afterwards, eat cake and rest...who cares. You did something you wanted to do; it made you happy at the time and you had fun. So what if you need to rest for a bit after? Just go do it. One thing I've learnt through this is, if I thought "now, is this gunna make me tired?" before I did something, I'd never do anything! For the record, chocolate cake makes me feel better as well!! Keep me posted how you get on with the adrenal test once the endo finally decides to chase it up.

hi friend! ice skating sounds like fun. i haven't been in years. do go, have a piece of cake, and count your blessings for maintaining a decent weight despite your thyroid disease. congrats on the new addition to your family. cheers!

Thanks Nat and Shemeka. So kiind of you to connect on here. :) well would you believe it, I got my dates muddled and all of the outdoor rinks are in fact now closed. I have a friend trying to persuade me to go rollerblading instead but I'm a bit less keen on that idea, 43 year old on ice, fine, why not? 43 year old on rollerblades, even I might be a tad self conscious if I stopped and thought about what I would look like!

it's great that everyone is so pro cake, it is truly the food of the gods. Let's all eat cake! At least until the weather picks up eh? :)